Category Archives: Dementia and Alzheimer’s

How do you really know your loved one is getting good care?

cautionNo matter often you visit your loved one when they are in a hospital or nursing home, you can’t be there 24/7. You can’t see all or hear all. So how do you really know they’re getting good care? The care they deserve? You don’t. You can’t.

My mom fell 7 weeks ago and has been in a skilled nursing center for the last 6 weeks for physical therapy so she’ll be strong enough to return to our house.

She stayed in this same facility two years ago for the same reason-physical therapy. Then, as well as now, the place is clean and nicely decorated. The staff is very welcoming when it comes to eating meals with my mom and visiting as often and whenever we’d like. I was confident that she would once again receive good care and return to us stronger than she had been before.

But, how could I really know? I couldn’t. And the big difference between the last stay and this one is my mom. Her Alzheimer’s is so much worse than it was two years ago!

My senses were on high alert from day one. All along there have been little, subtle things that concerned me. Not in a way that I felt she was being abused, but just that this facility, known for its physical therapy and as a nursing home just wasn’t equipped to handle a patient with this level of dementia.

Although long, this post is an effort to point out some things that might be subtle, and alone, probably don’t mean much. But when you start to add them up, you get a picture of a place that is not providing good care for my mom.

Check-In

Remember, she’s there because she fell. Two years ago, there was a pad on her bed and in her wheelchair. If she got up, an alarm went off alerting the staff. They got her settled in bed. No side rails, no alarm. I questioned this because I was seriously concerned that she would get up to use the restroom and fall. The answer I was given was that someone attended a seminar and found out that the alarms don’t really help because the patient gets startled by the sound and then falls.

(My answer? Use a silent alarm that alerts the staff in a pager. Also, I did a Google search of “do bed alarms reduce falls” and the most common answer was no, though not for the reason given to me. My point? She isn’t going to remember to call you if she wants to get up, so how will you know if she falls?)

Day 1

As an aide helped her to the restroom, she admonished my mom because she didn’t call her for help, saying, “Miss Carolyn! Don’t you remember you have to call me when you need to get up?!” To which I replied, “No! She doesn’t remember. She has Alzheimer’s.” The aide responded by saying, “Oh, I didn’t know that!”

She’d been there almost 24 hours and this aide did not know she was tending to an Alzheimer’s patient. 

Within the first week

One of the first things I did was schedule a beauty shop appointment for her. My mom’s of the “roller-set” crowd and desperately needed a perm so I quickly took advantage of the convenience offered by this in-house service.

When I visited later that evening, her hair wasn’t done. When I inquired, they said she didn’t cooperate. I suggested we reschedule and the beautician call me about 30 minutes before she was going to do it. I went over with my laptop, explained to my mom what was happening and sat in the salon while she got her hair done. No issue.

2 Weeks

During her care conference, we talked about the fact that she doesn’t eat much meat. From the dietician’s standpoint: “She’s only eating 25-50% of her food.” I suggested they cut her meat for her, which probably wouldn’t make much difference because she now seems to really prefer softer foods.

I acknowledged that I knew he had to provide her with certain servings and a balanced meal. I relayed that we tease her about her hollow leg at our house. She may only take one bite of meat, but she will eat four helpings of mashed potatoes, three helpings of fruit or the vegetable if she likes it. I asked if it would be possible for the dining staff to take note of what she’d eaten. If she hadn’t touched the meat, but all the stuffing and vegetables were gone, could they offer her more?

He cheerily responded, “Oh, she can always ask for more! Yeah, well, she has dementia, pal! She’s not going to think to ask for more!

The signs continued.

Her bed and clothes were soiled with urine. Often. She’s not completely incontinent. Sometimes she uses the bathroom, sometimes she uses the brief. When she’s home, if we notice her brief is wet we guide her to the bathroom and tell her to change her pants. Nothing ever soaks through. But, with no one really paying attention to it or encouraging her to change it, it just keeps getting more full.

ariel on dependsAt home, we keep her briefs sitting out on the bathroom floor. They used to be in her underwear drawer in her dresser. Then we moved them to the vanity drawer in the bathroom. Then right out in the open so she can see them. You see, she might go to the bathroom and notice that the brief is wet and full, but without seeing a fresh one sitting there, she wouldn’t know what to do about it. Guess where they keep the briefs in the facility? Inside her closet in the opposite corner of the room as the bathroom. On the top shelf (which she can’t reach when she’s sitting in a wheelchair even if she knew they were there)!

I got a call December 23rd from the social worker. My mom had been there nearly a month and it had been brought to the attention of the social worker that she was uncooperative when it comes to showers. Welcome to my world. The social worker thought maybe I could come in and help. We decided on 8:30 the next morning (Christmas Eve). I showed up at 8 ready to help. Of course the message hadn’t been passed on and the staff had already attempted to do it at 7 that morning. Let me tell you, my mom HATES taking a shower. I ended up doing the whole thing myself.

Up until then, I had been thinking that if they were able to qualify her through Medicaid to stay there permanently, I might do it. Then I thought if I’m still going to have to come in and do the very part of the care giving I hate the most, why would I pay them $7500 a month?!

I haven’t been asked to come in and help again with the shower, but I’m pretty sure she hasn’t had a full shower since. I know her hair hasn’t been washed. She doesn’t smell, so I think they’re managing sponge baths, which is ok, I guess.

On Christmas morning, my son and I went to pick her up to bring her to our house for the day. She has an ankle bracelet on because of the dementia. She’s an “elopement risk.” I was told they don’t take it off, but to let the receptionist know we were going out and she’d turn of the alarm while we exited the building.

No receptionist. Waited a few minutes. No receptionist. Well, it’s Christmas, and I don’t have all day. Out the door we went. Alarm ringing loudly. We loaded her in the car and my son stayed with her while I took the wheel chair back to her room. I walked back in and was well past the lobby before a member of the kitchen staff finally peeked around the corner to see what the alarm was for. A good three to four minutes had passed before anyone even noticed.

All of these things are noteworthy in and of themselves, but when you put them all together, a picture of poor care begins to emerge.

One of the best things about my mom’s stay has been her room mate. A wonderful woman who is simply there for physical therapy. Her mind is sharp as a tack! I’ve learned much more about my mom’s progress, mood and behavior from her than all the staff members combined.

Last night, she told me that she has reported three of the aides for their treatment of my mother. Two of them were fired. The incident that resulted in the termination had to do with my mom’s shower. Now, my mom swears and hits and yells about a shower. She HATES them! Especially when they come in at 7 am while she’s sleeping, turn on the lights, wake her up and say, “TIme for your shower!” I’d cuss, too! Apparently, they weren’t too kind in return one day. I don’t believe they were physically abusive, but whatever they did exactly was enough for them to be fired. (Mind you, I haven’t been informed of any of this by the facility.)

What disturbs me most is this: One morning about 5:30 am mom’s room mate called the aides because she needed assistance herself. Two responded. When they finished with her, one said to the other, “Hey, watch this.” She then went over, turned on my mom’s light and said, “Wake up! Time for your shower!” Just to get her riled up. This infuriates me.

I called this morning and told them I will be bringing my mom home on Friday. (I can’t do it sooner because of paperwork and the need to make some arrangements for her here at home.)

The good and bad of this is that my mom doesn’t remember the ill-treatment. She raves about how good they are too her. But, because she doesn’t remember any of it, she can’t report it. I’ll never trust anyone I don’t know well to care for her. Not ever. Even if she were in a facility that specializes in dementia care, this type of disrespectful treatment could still go on. And there, her room mate wouldn’t be able to tell me what’s happening any more than she can.

If you made it through this whole post, thank’s for hanging in there. I shared this story to demonstrate that mistreatment of your loved one doesn’t necessarily manifest itself in bruises, bed sores and a dirty, dingy environment.

I encourage family members to look for the little things, the subtle things along the way to know if your loved one is being treated with respect and dignity in addition to having their physical needs met. Be vigilant. Talk to room mates, families of room mates. The staff. Let them know you’re watching! And don’t be afraid to speak up and take action when it’s not going as you think it should.

UTI: Know the symptoms!

If you have an elderly person in your life, it is imperative that you know the symptoms of a UTI (and don’t ignore them).

My first experience with a UTI in the elderly was several years ago. I went to my mom’s house and found her in bed in the middle of the day. Unusual behavior. Her speech was slurred. Unusual behavior. And she wasn’t making any sense. Unusual behavior. I thought she had had a stroke. I called 911. The paramedics thought the confusion was dementia. I knew differently.

UTI.

The next encounter was about 18 months ago. My mom, now diagnosed with Alzheimer’s but still living independently, fell four times in three days. Unusual behavior. The fourth time she fell was in the middle of the night. As my husband drove over to pick her up off the floor, I Googled “sudden frequent falls + Alzheimer’s.”

UTI.

She ended up in the ER the next day after seeing the doctor. She was sent home to our house with an aggressive antibiotic. Four days later, she literally slept all day. Unusual behavior. When I checked on her before I went to bed, her voice was childlike, speech was slurred and she wasn’t making much sense. Unusual behavior. I suspected the UTI had gone south and called 911.

She was septic. She spent 5 days in the hospital followed by 30 days of in-patient rehab to build up her strength.

Last year, my friend’s mother-in-law came for a visit. I had never met her, but my friend was talking about how much worse she was than they realized. She suffered from Parkinson’s related dementia, I believe,  but she  was hallucinating and was very confused. Unusual behavior. I asked my friend if it was possible she had a UTI. Upon her return home, it was confirmed. She ended up in a coma. Thankfully, she recovered.

And, last night. My sister-in-law sent me a text that my mother-in-law had been sitting on the bathroom floor for two hours. Unusual behavior. I called and talked to my MIL for less than 60 seconds. Her voice was lethargic and sad. Unusual behavior. Moments after I hung up the phone, my husband walked in the door from a business trip. I told him to kiss his kids and go to his mom’s house. Something wasn’t right. Maybe it’s a UTI.

She was admitted to the hospital for UTI and dehydration-which often accompanies a UTI.

I’m not a doctor or a nurse. I’m simply a caregiver with experience and the internet. If you Google “sypmtoms of UTI in elderly” you will find over 860,000 results. I urge you to read some of them. You will find things like:

“The best indication of a UTI in the elderly is a sudden change in behavior.

“And for people suffering from Parkinson’s disease, Alzheimer’s disease, or other dementia, “any kind of stress, physical or emotional, will often make dementia temporarily worse,” Forciea says”

“elders often don’t exhibit any of the common symptoms – or don’t express them to their caregivers”

When caught early, UTIs are highly treatable. Whether you are a caregiver or not, familiarize yourself with the myriad of ways a UTI can wreak havoc on your loved one.

“Knowing that a urinary tract infection in the elderly can be symptom-free is the first step in avoiding serious complications from untreated UTIs. Any time a change in behavior is noted in an elderly patient, a urinalysis should be performed to rule out a urinary tract infection.”

Moving Mom

moving-dayFourteen short months ago my mom was still living alone. She lived just 5 minutes from us and we would go there daily. She had three neighbors who also looked in on her. We knew the time was coming when she would have to move in with us and we had a vague idea of what we would do.

Back in October 2011, she began falling. By the grace of God, she never got hurt, but when she called us at 2 am because she’d gotten up to use the bathroom and fell, I had to figure out what was going on. My husband, who I affectionately refer to as St. Michael, went over to get her up and I googled “sudden, frequent falls + Alzheimer’s.”

Urinary Tract Infection.

She had a check-up scheduled a few days later, but I don’t mess around with UTIs so we went to see the doctor the next morning. She was extremely weak and unable to give a sample. While we were waiting for the doctor to come back in with prescriptions, she began to complain of chest pains. Doc wasn’t going to fool around with that and called an ambulance.

ER ran every test known to man checking her neck, chest, lungs–all good. But, she did have a UTI. Sent her home to our house with an antibiotic. We told her she’d be with us a couple weeks until the infection cleared up and we could determine if she was still falling. Four days later the UTI went south. She slept literally all day. When I went to check on her at 11 pm before going to bed myself, her speech was slurred and she wasn’t making much sense.

Back to the ER.

That was a nightmare. They were very busy. The decision to admit her came pretty quickly but the hospital was apparently full. She was sleeping comfortably, I, of course, was not. The patient in the next “room” was a psych or criminal patient with a guard outside the door. After we’d been there a few hours, another such patient was brought in so they moved my mom, allowing the guard to do double duty. The only place they could move her to was a trauma room. Clear at the end of the hall, out of sight and out of mind.

At 5 am, the nurse came in and said they paperwork was all done, but there was still no room. I was nearly in tears from exhaustion. She assured me I could go home. My mom did, too. Had my mom been in the other room, that would have been easier. But in this room, she was going to need to use the call button if she needed someone. She wouldn’t remember where it was. She wouldn’t remember where she was. She would be scared.

Still, the realization hit me that people don’t get released from the hospital at 5 am. If there was no bed now, there wouldn’t be one for hours. My physical limitations won out. I wrote a note for my mom and laid it on her belly and pulled the call button up on top of her so she could see it. I gave her a kiss and went home. I sobbed the whole way. I don’t know how I didn’t have an accident.

My husband went up to the hospital as soon as the kids were off to school, arriving about 3 hours after I left. They were just moving her to the “admission waiting rooms.” He called me around 11 and said they’d be getting her into a room about noon. I went back to the hospital and he left. She didn’t get into a room until 3:00 that afternoon.

She spent five days there and was then transferred to a rehab facility for physical therapy to build up her strength. She stayed there 30 days.

Late on a Monday afternoon I got the call that she was going to be released on Wednesday to our house, permanently. By this point, we knew she’d be coming to live with us so our plans were a little more defined than they had been six weeks earlier, but we were under the impression she was going to be at the rehab faci at least a couple more weeks.

We had to scramble.

I called St. Michael who left work and came home so we could begin moving her furniture to our house and getting her room set up. We worked all afternoon Monday and all day Tuesday. Of course it poured down rain the whole time. We finished about 7 pm on Tuesday. Leaving only a few things that I didn’t want to get wet until the next day.

Fortunately, everything of great value had already been moved to our house. Still, many items with sentimental value were taken.

Fortunately, everything of great value had already been moved to our house. Still, many items with sentimental value were taken.

My husband went to work Wednesday. He was to fly out that afternoon for a business trip. I got to my mom’s around noon for the last load and found her house had been broken into overnight.

Because I didn’t have enough to deal with already!

Police called. Business trip cancelled. Tears shed.

Hubby came home and we moved my mom in with us that evening.

When I picked her up that mid-October morning to take her to the doctor, neither one of us had any idea she’d never see her home of 41 years again.

So many of our parents will have to eventually leave their homes and it’s not likely to happen when it’s convenient or according to a prearranged schedule. If your loved one is showing signs that he or she is not going to be able to live independently anymore, I urge you to create a plan! Have the tough conversations with all family members involved and start researching options.

Many times the conversations that need to take place don’t because siblings disagree on what’s needed or they don’t live close together. Sometimes it’s just a matter of getting around to it.

It’s going to be difficult when the time comes. Having a plan–even if it’s not time to act on it, is in the best interest of everyone.

Especially the loved one involved.

Talk to me! Are you facing the inevitability of your loved one needing round-the-clock care? Have you already had to move your loved one out of his or her home? What successes or failures did you encounter?

Take care of you.

keep-calm-and-take-care-of-you-13One of my favorite movies of all time is Pretty Woman. Julia Roberts and Laura San Giacomo play friends and roommates who are prostitutes–dangerous work. Whenever they say goodbye to one another, they say the same thing.

“Take care of you.”

I’m not a prostitute.

I’m a wife.

I’m the mother of four young children.

I’m the caregiver of my mother who has Alzheimer’s.

I’m stressed out.

I’m overweight.

I’m tired.

I hear the words over and over in my head. “Take care of you.” “Take care of you.” “Take care of you.”

I hear it at my support group. I read it on some of my favorite blogs and magazines. I see it on TV.

Easier said than done! But I’m learning.

I’ve joined a support group. This is THE single best decision I’ve made along the way. It is a source of information, resources and emotional support. I’ve never missed a meeting!

I’m learning to say, “No.” That’s a tough one for me. I’ve been a people pleaser my whole life. I like to help people. I also like to feel needed. So, when someone asks me to do something, my knee-jerk reaction is to say, “Sure, I’d love to!” In the last year, I’ve scaled back my volunteering. I now focus my efforts on only those things that really bring me true enjoyment. If the activity causes me stress, I don’t do it.

I also cancelled a family reunion I was to host this summer. That was hard for me to do. I love my family and don’t get to see them often. If I put it off, will my mom still be here? Will she still know them? I’ve wanted to cancel it for awhile. But, I kept telling myself not to make the decsion on a day when I was stressed out…but to make it on a day when I’m not. Then it hit me: I’m almost always stressed out!

I’m asking for help. Another tough one. I think  I’m generally thought of as self-reliant and strong. It’s difficult to admit that I can’t do it all.

I write about my feelings. This blog is a great source of therapy for me. If I am able to help anyone along the way, so much the better. I don’t publish everything I write. Some of it is too emotional. Maybe one day I’ll share those writings, but not yet.

What I don’t do is eat right or exercise. The eating thing is really tough. I’m an emotional eater. If I don’t get this under control, I’ll weigh 600 pounds before this caregiving journey is over. Exercise is tough, too. It’s hard to find time for it. But I must! I’m not getting any younger and it’s not going to get any easier!

What do you do to maintain your sanity as a caregiver…whether you’re caring for your kids or an aging loved one–or both, like I am? I’d love to hear from you!

Take care of you!

A is for Alzheimer’s

When my mother began forgetting things, we chalked it up to simple old age. She put a calendar on her fridge to keep track of appointments and a notebook and pencil by the phone to write down important notes. No big deal. I mean, who among us doesn’t forget things, right?

As it got worse, I couldn’t remain in denial. We went to her doctor and he diagnosed her with dementia and prescribed Aricept. I asked him then if she should see a specialist. His response, “No. There are only two drugs that are prescribed and she’s on the more effective of the two. There’s really nothing else they can do.”

What a bunch of baloney!

My instincts told me better, but I was in uncharted and overwhelming territory. I really had no idea what to do or who to see. So, I did nothing. The Aricept did help her memory, but not enough for her to be driving (though at that point she still was).

About 10 months later, my friend saw a notice in the paper about a support group that was starting at a local eldercare facility. The group was aimed at caregivers of those with dementia. It was a four week session. I missed the first week, but went to the other three sessions.

It was the best thing I ever did! I learned so much! Right away, I learned about “geriatric evaluations.” I had never heard of this before, but some of the others’ loved ones had done this and the facilitator of the group highly suggested it. I left the first meeting with something actionable to do!

In less than a month, we were on our way to the University of Michigan to meet with Dr. Judith Heidebrink, a neurologist at the East Ann Arbor Health and Geriatrics Center. Dr. Heidebrink asked a lot of questions and examined my mother. She ordered blood work, an MRI and extensive cognitive testing.

She also dropped the A-Bomb. She suspected my mother had Alzheimer’s. OUCH! Somehow, dementia didn’t sound so scary. But Alzheimer’s. That’s. Not. Good.

The tests took place over the course of the next several weeks and less than two months after we started, we were going back to get the results.

Although there is no way to diagnose Alzheimer’s exactly, other things can be ruled out and certain things in the brain strongly indicate whether or not a patient has the disease. All roads pointed to Alzheimer’s.

The doctor went over all  of the results with us and sent us home with the results and recommendations that came from the cognitive testing–five pages of information all about how well, or poorly, my mom was functioning in different areas.

In some areas, she tested better than average or pretty close to normal limits. When it came to memory, she tested in the 1st percentile. That means if you lined up 100 people her age her memory would be worse than 99 of them! But, she could still cook and shower and dress herself. In some ways, she was still functioning very well.

The doctor  and a social worker both counseled us that now  the important thing was keeping her safe. She shouldn’t be driving. Check. That battle had already been fought. Someone should be managing her finances. Check. She needed medication reminders. Check. I’d been taking her medication to her every day for several months since I realized she wasn’t taking it at all.

We left that day with some other A words. Yes, she had Alzheimer’s. But we had some Answers and we had and Action plan.

Dementia and Driving

 ”When you tell me it’s time for me to stop driving, I won’t argue with you.” I can’t tell you how many times over the years my mother told me this.

She’d had the responsibility of telling her father, a notoriously bad driver, that it was time for him to stop. I think it came after he sideswiped several parked cars in one trip.

He didn’t argue. He didn’t put up a fuss.

She always promised me she’d follow his example.

HA! Famous last words.

When it became very clear she shouldn’t be driving–for her own safety as well as others, My husband and I went over, sat down in the living room with her, made a little small talk. Then I said, “Mom, you’ve always said that when I told you it was time to stop driving, you wouldn’t argue with me.” To which she replied, “I won’t. But it’s not time.”

Oh boy.

Long story short, I told her I was just going to take them for a month until she saw the doctor again. She’d been diagnosed with dementia and had started taking Aricept. She was going back for a follow-up visit in a month.

I lasted 4 days. She made my life a living hell. She would call me and yell at me, call me names. We’d hash through everything, she’d calm down, say she understood. Ahh.

Then, two hours later, she’d call back and we’d do it all again. I don’t know if she was forgetting our conversations or just sitting there stewing and getting mad all over again. Maybe a little of both.

Before long, my husband was screening the calls to protect me. I wasn’t functioning. So I gave them back. I called her doctor and asked him to counsel her that it was time to stop driving.

I took her to that appointment. He counseled her brilliantly. It didn’t do a bit of good. I was torn up. My options were allow her to keep driving and risk her getting lost, hurting or even killing herself or someone else. How would I live with myself is something did happen? Or, take the keys and have her put me through hell for the rest of her life. How would I even function?

Like many of the decisions I’ve faced along this journey, I procrastinated. Five months after I initially took the keys away, she showed up at my house unexpectedly. My husband was there, I was on my way home from a meeting. He told me she was there and I said, “Oh, she had a doctor appointment today, she’s probably coming to tell me how it went. Tell her I’ll be there in a few minutes.” We hung up.

He called me right back. She hadn’t been to the doctor yet. She was on her way and couldn’t find it. Uh-oh. We live in a small town. Getting to the doctor from her house requires two right hand turns. She couldn’t find it even though she’s been a patient there  for 20 years or more.

I told my husband to take her to the doctor and I’d meet them there. In the meantime, I called ahead, gave the staff the scoop and requested that the doctor confront her with it and tell her she couldn’t drive anymore.

I drove her home, and told her I needed the car to get back home.

In the months since my first attempt at keeping the car, I had learned that I could submit a letter to the Secretary of State indicating that I thought my mother was an unsafe driver and why and request that they test her. They requested some information from the doctor and scheduled an appointment for her. I was able to remain anonymous to her in this process.

A few days before the test, she said she needed to practice driving. So, I picked her up, and suggested she drive to the doctor’s office. The mechanics of her driving weren’t really an issue, the problem was she didn’t know where she was going. She drove all over town. She never did find it.

On the day of the test (which was an hour away), my husband took her. We knew she would leave the facility without her driver’s license and she would be fuming mad at me. I was afraid she would get me so rattled on the way back that I’d have an accident. So he took her.

They didn’t even give her a driving test. She answered a few written questions, which, my husband isn’t even sure they looked at. They revoked her license then and there and gave her a letter stating that if her medical condition changed, she could reapply for her license.

I wish I had known about the Secretary of  State option from the beginning. She blames me for everything. She knows I’m responsible for her not driving, even though I’ve never admitted having anything to do with the “test.” I can’t help but wonder if things would be different had I never said anything about her driving and just contacted the state. (For information on this in your state, click here.)

It took four months, and my promising to get her a new car if she were able to get her license reinstated, before she agreed to sell her car. It’s been 11 months since she drove and thankfully, she isn’t still yelling about it. Maybe it’s because she’s accepted it. Probably it’s because other stuff has happened since then for her to be mad about.

But that’s a story for another day.

Dementia and Denial

My mother, who is now 82, was diagnosed with dementia 1 1/2 – 2 years ago. I remember leaving the doctor’s office with her. Driving in relative silence back to her home as she clutched the receipt for her visit in her hand. She looked down at it, read the word “dementia” written in as the reason for her visit and said, “I hate this.”

For at least a couple years, she’d been increasingly forgetful. She’d repeat herself, forget appointments. But really, who among us doesn’t? She kept a calendar on the fridge for appointments and a notepad by the phone so she could write things down to help her remember. No big deal.

An extremely strong and independant woman, she’d raised me alone from the age of 15 when my father died suddenly.  She often worked two, three, even four jobs at a time  to keep food on the table and put me through college. She had been my best friend ever since my father died. We talked on the phone daily…sometimes multiple times. I noticed the forgetfulness, but shrugged it off as normal for an aging person.

She’d also lived alone since I got married until about four years ago, I think. A good friend of hers fell on some hard times and needed a place to stay. It was only supposed to be for about three months, but turned into much more. Even though I could see my mom’s memory starting to fail, it was probably not as obvious because the friend helped her so much around the house.

During this time, I was busy with my fourth baby, so her roommate eased my mind and my load immensely. My kids were keeping me very busy and my focus was on them. If I’m going to be completely honest, I probably pushed some thoughts of where this was headed aside. The world of elder-care is daunting–something I knew nothing about. I also knew, well, sort of, the impact all of this would eventually have on my life and didn’t want to go there. It was painful, overwhelming.

So, I suppose I  was in denial. I even remember thinking that from time to time.

Just about a year ago, there was no denying it anymore.

She got lost–twice. Although, for a long time, I only knew about one incident. Her roommate knew, but out of loyalty to my mother, didn’t tell me.

Then one day she mentioned in casual conversation that she forgot how to use the oven.

Uh-oh.

Her dementia reached out and slapped me in the forehead like a brick. If she could forget how to use the oven, she could forget where the brake was on the car. She could get lost, flustered, forget the mechanics of driving. Hurt herself. Hurt someone else.

Time to think about this seriously. My responsibility. What do I do? What’s the first step? Who do I talk to?

In a word? Clueless!

I wasn’t in denial anymore, but I didn’t know where to start.

Alot has happened in the last year. I’ve made, and am still making a lot of mistakes. But, I’m learning. In this series of posts on dementia and Alzheimer’s, I will share my journey as a caregiver hoping to provide information and support to others in my shoes. Maybe some will read this who have more experience than I do and share what they know so I can make fewer mistakes going forward.

Too Chaotic for My Chaotic Bliss

I last blogged about 6 1/2 months ago. I was elated when I wrote that post . Michael had just been hired after a long layoff. Just six weeks later, he was laid off again as the start-up company quickly realized they’d hired more people than they could afford at such an early point. He wasn’t the only casualty, but that was little consolation.

What ensued was 3-4 months of chaos–and nothing about it was blissful. I’m not going to go into a lot of details, but suffice it to say we were sinking fast. And I guess, maybe it wasn’t fast. Afterall, the initial layoff began on August 20, 2008, so it had been nearly 2 years. Hope was hard to come by. Faith was being tested. Life pretty much stunk.

During all of this financial stress, I had another major stressor in my life. My mother and her continuing decline into dementia.

I have truly never known such stress, such despair, such an overwhelming feeling of, well, being overwhelmed. (Let’s not forget I’m the mother of 4 young children).

My prayers shifted their focus. Instead of  just praying for blessings on our family, my prayers became desperate. Something had to give. I believe the Lord won’t allow you to go through more than you can handle–

1 Corinthians 10:13: No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

but, I was truly reaching the end of my rope. Something had to give. You know, I’m very familiar with the first part of the Bible verse above. But I found myself forgetting, maybe doubting the last part–”He will also provide a way out so that you can stand up under it.”

Then came August. Our darkest month financially.

My friend Elizabeth told me about a support group for caregivers of dementia patients. Oh, my gosh! Talk about a gift from God! Our group met weekly for  the first month, and now we meet monthly. I have learned so much and am so much better equipped to handle my mother’s care now than I was before.

Out of the blue, the ladies from my church took up a collection and provided us with a gift card to help with back to school shopping.

By the end of August, Michael’s freelance work was really picking up again.

September was a good month, too. But by mid-month, it got really good!

He landed a terrific job! Two days before he was contacted about the job he said, “When it’s right, it will be easy.” Well, I guess so! This opportunity came looking for him. It’s quite literally his dream job. You can read his take on his blog at Mike’s Points.com.

The Sunday after he was offered the job, I sat in Bible study at church and listened as the teacher read the following passage to us from James 1:

 2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything.

and,

12Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

I doubt it was coincidence that those passages were the focus of our discussion that day.

Michael started his job on October 4. We’re adjusting to another new normal. It’s a good adjustment to make.

Life’s less chaotic and more blissful now.

Thank you,  God!